Why is international research on the prevalence of autism important?

“Got Questions?” is a new weekly feature on our blog to address the desire for scientific understanding in our community. We received over 3000 responses when we asked what science questions were on your mind. We answered a few here and the Autism Speaks Science staff will address the other themes we received in this weekly post.

Evidence suggests that autism knows no cultural, ethnic, or geographic boundaries. It affects 1 in every 110 children (or about 1% of children) in the United States and converging research findings from around the world suggest that autism may affect 1% of the global population. However, most autism epidemiology studies to date have taken place in select areas of relatively developed nations and communities and have used strikingly different study designs that complicate comparison across studies. Further, very little is known about the occurrence of autism in low-resource territories with limited to no public health capacity and infrastructure. By working to address these barriers and to facilitate well-designed epidemiology research around the world, investigators can begin to answer questions surrounding the occurrence of autism globally.

International research can help address questions regarding the causes of autism and changes in its occurrence rates over time. Specifically, by comparing autism prevalence across nations, researchers can generate clues about the involvement of genetic risk factors or environmental exposures. International studies create opportunities to study autism in different ethnic groups, in special populations (e.g., those that are genetically closely related), and among populations with specific or uncommon environmental exposures (e.g., certain pollutants) not found elsewhere.

Additionally, some nations have special resources, such as health registries and surveillance systems that can generate large datasets and make previously impossible studies on the causes of autism possible. Autism Speaks is currently supporting the iCARE project which combines data from Norway, Sweden, Denmark, Finland, Israel, and Australia to investigate pre- and peri-natal risk factors for autism.

Just as autism’s high prevalence rate drove its emergence as a public health priority in the United States, children in nations around the world will benefit when their governments recognize that autism is not a rare disorder. Epidemiology research can help increase awareness about autism and help government agencies develop informed policies regarding care of individuals and families with autism and other developmental disorders within their country.

In addition to epidemiology, it is vitally important to investigate additional areas relevant to public health research and dissemination. Specifically, understanding the economic impact of autism can help researchers and advocates gauge the impact of autism on societies, including the quality of life of affected individuals and families. Equally important, this information can serve as a means to promote increased access to low-cost and widely available services, such as through healthcare insurance reform in the United States. Additionally, the impact of early diagnosis and early intervention on the economic burden of autism can be assessed to further make the case for increased service support to both general and underserved populations in the U.S. and aboard.

International autism research will not only shed light on the scope of the autism challenge around the world but will also serve to raise global awareness of autism. As this increased awareness can help galvanize communities, epidemiologic findings have the potential to influence government, public health agency, and medical organization policies and practices, thus benefiting previously underserved communities. In low-resource countries in particular, these efforts will function to enhance the infrastructure and capacity necessary for ongoing autism research as well as for services. International research may also help uncover previously undiscovered genetic and environmental factors that contribute to the development of autism spectrum disorders, thereby further benefiting the scientific community and ultimately, affected individuals and their families.

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Thanks for posting on the importance of global research on autism. It is important for the nations who have data to share it with others and to obtain data from those nations where little or no data exists. Indeed, such a collaborative effort will benefit communities, families, and individuals with autism, as you say.

Yes international research is important but helping other countries facilitate their own research rather than asking for struggling American families to pay for it is the best route at this time.

The data banks are great for the countries themselves- the utility of these banks to American families is unconvincing. Norway, Denmark, etc…are HIGHLY homogenous nations- vastly differnt from the USA. They have differnt vaccination schedules, differnt environmental expsoures (PBAs have been illgeal for many, many yrs there)and very differnt means of counting the ASD population. We all saw the very tricky and manipulative numbers dance by the Danish Serum Insitut and Poul Thorsen (wanted for embezzlement and other crimes). First they counted only out-patient ASD (by far the minority- until recently ASD children were surrendered by their families to the state) then both out and in patient numbers a few yrs later to achieve then same “growth” rate as the USA.

We need a lot less international research and a lot more domestic envionmental research.

My name is Katie and i have a 21 year old autistic child. He was the best child up until about september when something snapped in him, he has become very agreesive and violent, he is now self-mutalating him self by digging hole on his body. we have been to three different hospitals and no one is willing to take him becuase he is non verbal, we live in michigan but are willing to travel anywhere to get him help. His medications were not changed until the behavior became an issue, nothing has changed in his life. Has anyone ever had this happen to their child? Does anyone have any help for us? we are despriate and in urgent need of help. Please help

I just had my son tested for autism a few weeks ago. And she told me that she is tempted to put him in the autism spectrum but hesitates because she thinks that his temperament,anxiety and language problems may be doing a mimic of autism. So now i don’t know what to do for him can anyone help???